MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Hi everyone, i'm Ginger and i'm newly diagnosed with stage 3 C melanoma ..Here is a  little bit of my story..I'm hoping to learn some things from you guys and what you've been through..

I had a mole removed in Jan of 2014 by Michelle Palazzo and was diagnosed with stage 3 C melanoma 10 mm with lymph nodes involved..I underwent a neck dissection by Dr. William Wooden from Indiana University Hospital in Feb 2014 and the melanoma had wrapped around nerves and muscles in my neck..Surgeon said each node involved had 33 fingers of cancer coming off each one..He was shocked.He referred me to Leslie Fecher a melanoma specialist also from Indiana University Hospital.I am currently on my 3 rd week of the high dose interferon IV under the care of Dr Mian Mushtaq in Jeffersonville Indiana Norton Cancer Center(transfered treatment closer to home )and am not having hardly any side effects, i'm a little tired but that's about it..I will be doing the shots 3 times a wk for 11 months and possible radiation...I had a CT scan ran two wks ago and it came out fine..I'm hoping the shots are as easy as the 30 day treatment.,

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/23/2014 - 2:11am
Replies by: Anonymous, POW

I was diagnosed Stage IV in January and BRAF+ soon thereafter. Significant tumor load affecting all major organ systems, though I hadn't felt that anything was wrong until December. By the time I finally started treatment, I could barely walk across a room without help.  No brain mets. Getting treatment at Providence Portland.

After two months of Zelboraf, my tumor load had decreased by half and I was feeling much, much better. Soon after, I noticed what I thought was a new tumor under my scalp and then more in my neck, two new nodules near the primary, and another bump I could feel on my shoulder had started growing again. I was hoping for longer on the Zelboraf, but you get what

you get.

I've been given four options:

(1) IL-2

(2) Ipi (with intent to join an Ipi/Nivo trial as soon as the new arms open, but that could be weeks)

(3) IPI and GR-MD-02, a galectin inhibitor (Phase 1 trial, 85 days. I'd almost certainly be in on the lowest dose as it is just starting and there's no dose escalation for individuals.)

(4) Randomized trial, IL-2 with SBRT or IL-2 alone. 

All this keeping in mind that the approval of Nivomulab is imminent.

I'm scared of the IL-2, not so much of the side effects, but because I am reluctant to miss out six weeks of what could be my last summer with my kids. OTOH, I'm relatively strong right now and might not be able to tolerate it later if another treatment or treatments fail. Though the chance is small, there is still "home run" potential.

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/23/2014 - 2:02am
Replies by: Anonymous, Marianne quinn

Hello to ALL, I am new to this site. I have questions. I am a 36 year old women. I have found a lump in my groin area about the size of 2 peas put side by side. I do not feel pain, just sum discomfort only due to its near the crease of my leg. I have also found a dark spot, a small spot on the labia. My questions are, has anyone had anything smiliar to this?
I do have a scheduled appointment with my doctor in June. I would be very grateful for any information, I would not like to assume that it could be melanoma, I have browsed the web for photo's, I didn't find that helpful, thank you for replying if you do.

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Leslie'sHusband's picture
Replies 6
Last reply 4/22/2014 - 11:17pm

I have a question about what Les and I are seeing in her JP drain...  The nurses told us not to be concerned about seeing blood clots in the drain, and not to mess with them.  What they didn't tell us is what, exactly, a blood clot in the drain tube looks like.  We are seeing a long, thin, pink thing that is almost the length of the tube.  It looks like what I would imagine a vein would look like.  Fluid is still draining, but that thing looks strange.  Les is going to call the Dr's office this morning to ask about it, but I wanted to ask here, too.  Should we be concerned?

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Anonymous's picture
Replies 2
Last reply 4/22/2014 - 4:25am
Replies by: Anonymous, Janner

Hi All -

 

I had a mole on my stomach , of about six years, removed last month (I am 28). After more than 3 weeks of not hearing back on the path report, I assumed no news was good news. I finally heard from my dermatologist that it came back positive for melanoma. 

I am waiting for my scheduleed appointment with an oncologist, but did see my pathology report. It took so long because the lab actually consulted with another doctor on the pathology slides for help interpreting. The second consultation saw no vascular invasion, but noted that it was an "unusual" melanoma and noted to the lab "thank you for forwarding this problematic and interesting" case. 

Of course I can't help but get nervous with that wording! Has anyone had a similar experience? I am assuming that it is great there is no vascular invasion, but it's hard not to get anxious hearing a doctor call you "problematic..." 

I am meeting with a few oncologists - surgery, dermatology, and medical oncologist - at the request of the specialosr. We'll discuss treatment, get my (third) consultation, and schedule additonal surgery, but I would love to hear any similar stories.

 

Cheers!

M

 

 

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/22/2014 - 8:55pm

I am newly diagnosed stage 4 patient with mets in spleen liver and brain. I am currently on vem as have tested Braf positive. However I am sick with worry about my prognosis. I am only 33 but I am not going to make it to my retirement am I? X

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kellygrl's picture
Replies 10
Last reply 4/23/2014 - 2:42am

My husband was diagnosed with brain mets 3/12, had WBR, tolerated well, but tumors did not respond. He got 14 good months out of Zelboraf, tolerated well... then Zel quit 9/14. Gamma Knife in Aug 9/14, tumors responded. Has been on Dabrafenib/Trametinib combo since 11/14, recently added Yervoy to the mix & has had 2 infusions so far. A second Gamma in Feb and results today from all of the above.... brain mets shrinking and some necrosis from gamma! Most likely a third gamma in a few mos to get remaining tumors.

Keep that Positive Mind and Attitude!!
Stay Strong and prayers sure don't hurt either. :)

Kelly

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/22/2014 - 5:47pm
Replies by: Janner

In 2010 there were quite a few posts on Celebrex  any updates

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evleye's picture
Replies 4
Last reply 4/22/2014 - 10:53am
Replies by: dsfarms13108, kylez, evleye, Anonymous

Is there a website or document that summarizes all the different treatments available (FDA approved and trials)?  I am so confused by all the names and abbreviations!  I find out tomorrow what my plan of action is for my treatment and want to be prepared with some knowledge on the different options I may be presented.  Thanks!

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Dave from Ormond's picture
Replies 3
Last reply 4/21/2014 - 2:14pm

On November 22, 2013 I received my last dose of Yervoy/Ipi.  My December CT Scan showed no new growths and shrinkage of existing in the area that received radiation.

On February 12, 2014 I had a follow up scan that showed new mets in both my lungs, liver, stomach, and spine.  The largest were in my lungs at 10 mm.  The others were between 6 and 8 mm. A follow up Brain MRI showed 4 small spots in my brain.  We did 15 whole brain radiation treatments to treat this area prior to starting the B-raf/MEK treatments.

To achieve a baseline of where my mets where at in size and location, we did a PET Scan on Monday, April 7, 2014, which is the day I started the B-raf/MEK treatment.  The results of this scan showed NO METS in my LUNGS, LIVER, Stomach, or BRAIN.  I did have 5 new mets pop up but only ONE of two on my spine was there in both the CT Scan and the PET Scan.

My question to everyone is this:  Is it more likely to be a scan error or a Yervoy success?  

I'm interested in hearing others opinions as my Doctor would not commit to either and said that it is very possible that Yervoy did cure it, but there is also a chance that the PET Scan didn't pick them up because they are small.  He is counting on the CT scan that will determine if the braf/mek is working after 8 weeks to put any debate to rest.

Thanks for your input.

Dave

The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

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Cbs805's picture
Replies 4
Last reply 4/22/2014 - 12:13am
Replies by: Cbs805, oceanbeck, Anonymous

My husband started the Merck expanded access program last week at Beverly Hills Cancer Center.  Dr. O'Day, a renowned melanoma specialist is running it. We have been going to BHCC since his diagnosis which was last April.  It is a great place.

CBS805

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robbier's picture
Replies 2
Last reply 4/21/2014 - 3:18pm
Replies by: Teochasse, kpcollins31

  Last week I had two surgeries on hotspots that was of concern from my last pet/ct scan.( On on the right side and the other on the left)  Of course I should find out what these where when I go back and see on surgeon on Tuesday of this week.  I am also schedule for a lung doctor to go and do a biopsy of a spot on my lung the size of a pencil eraser. That will be Wednesday of this week.  I haven't heard from any of the test they have done within the last week, and course, at this point, I am thinking no news is good news.  I am doing my best to stay strong, and positive despite what the Doctors is saying at this point, and of course that not always easy.  I realize everyone goes through these things, that I am not the only one.  I might not understand why I am going through this at this time.   Sigh!   I am so ready for this part of the ride to be over with and the not knowing to be over with.

  I am still believing that those two spots are just that nothing but spots, and that place in the lung is also just that a spot and not cancer.  will keep y'all posted on what I am told when I get the information.

Robbie

 

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Pam S.'s picture
Replies 5
Last reply 4/22/2014 - 8:38pm
Replies by: Pam S., Maureen038, Anonymous

My husband (60yrs) dx stage 4 end of Nov was in his small intestine, lung and brain. Have had 3 gamma knifes -last MRI -only 4 tumors left (out of 9) . Has 3 tumors removed from small intestine in Dec-took him a long time to recover was going to go back to work Feb 3. Started IPI in JAN It didnt work.  he had multiple seizures on Jan 27--scared me to death-took few weeks to get over this too. So no work. In March SOB and 2 bronchoscopies. Tumor in RLL one bronchus cleared-the othe main bronchus tumor is very hard. Having 10 days lung radiation  Tumor size of baseball. Meanwhile found 1 vertebrea fractured and will do kyphoplasty to put cement in the spine- cancer not in spinal cord at this point. Also will need some radiation on the spine. Also found mets in 1 rib and possibly on the liver and adrenal gland. Will have pet scan on Thurs. Am scared to death--dont know what to do-he is having such a rough time with fatigue-no energy-forgeting things-no appetite-he just want it to end. I am afraid with all this radiation he will never feel good again. I almost forgot will have bracyy therapy for 3 wks for his lung..Anyone had similar experience ? any advice- we have great DRs at UPMC/Hillman Cancer Center He doesnot have the bfar mutation. I need someone to talk to that is going thru this. All family and friends smpathize offer help but they dont understand-I am tired of questions and the "im sorries"    Just need to someone in the same boat--I dont think my husband has a lot of time and i feel helpless.........Thanks to anyone who can respond Pam.

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/20/2014 - 11:34pm
Replies by: Anonymous, arthurjedi007

Hello everyone,

 

I am a newbie here and trying to catch up. Ihave read about Merck pd1.

 

I know that there are a few locations sites in California that people are saying are open.

 

I would sincerely appreciate it if anyone can CONFIRM that a Merck EAP is in fact open and are now going thru the qualification process or has a date to start infusions.

We live in Northern CA, My  husband is stage 4.  He  has failed IPI & Braf. We need to get into the Merck EAP ASAP.

Thank in advance for your reply. God Bless you all!

 

MaryBeth

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/21/2014 - 10:10am
Replies by: Anonymous, Janner

Hi! I have recently been diagnosed stage 1b melanoma. I'm a new mom a freaked out that I won't be around to see my baby grow up. Can stage 1b make it? Even if the primary is 1.8mm? 

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